No Diagnosis as of Today :(

[natatak227]

Hi everyone! I'm new to the forum, but decided to join to help get some answers. I also posted on the general IBD discussion, so thank you to all who responded with support!

I've been suffering from Crohn's like symptoms since 2007. I say Crohn's like symptoms, because it is walking, talking and looking like Crohn's but I don't have a diagnosis yet. I've been through the ringer with testing and almost everything has yieled nothing!

During a recent Colonoscopy after I was sent to the ER with bleeding and clots, my doctor visibly saw 6 ulcers and large amounts of inflammation throughout my small intestine, near my colon. After the test, he told me he was 99% sure that he was going to be diagnosing me with Crohn's, but wanted to confirm through pathology. And, what do you know? Pathology comes back negative. I just don't understand how my doctor can actually see the inflammation and ulcers, but pathology says there isn't anything there!

Previous medications include donnotal, lomitil, pamine, immodium, and lotronex, all with no relief of symptoms, which include right side pain, diarrhea 12-15x/day and some joint pain. Currently, I am on a 40 mg titrate of prednisone along with 4000mg of Pentasa. After I tritrate down to 10mg of the prednisone, I'll start to take 3 pills of Entocort per day. The steriods seemed to decrease the diarrhea down to about 8-10x/day and I'm hoping the Pentasa starts to work soon too!

Oh, and I do want to note that throughout all of this I have not lost any amount of weight. In fact, I've gained over 80lbs in the past 3 years with improved changes to diet (i.e. eating less and healthier, but still gaining weight).

I'm currently waiting on the results of a Prometheus test for Crohn's as well as a CT Octreoscan to search for any microsopic tumors. I've been through 4 colonoscopies in the past 2 years, a video endoscopy, as well as a traditional endoscopy. Only in this past colonoscopy has my doctor found inflammation and ulcers. I've also been diagnosed with GERD.

I've been dealing with this now for 4 years trying to get a concrete diagnosis so I can move forward with healing treatment. Previously I had been diagnosed with IBS, but none of the medication my doctor put me helped my symptoms, so he said we are back at square one. I'm open to anything at this point!!!:yrolleyes:

 

[Jennjenn]

Hi welcome

If everything comes back with no answers I would get another opinion. There are people that have negative results with pathology and other various tests. I hope that you do get some answers and start to feel well soon.

 

[xJillx]

Hi and welcome! I am sorry you haven't gotten any answers in 4 years. Unfortunately, this disease can be really difficult to diagnose. Actually, I am in the same boat as you; my biopsies come back normal. Because of this, my GI won't officially say it is Crohn's. It is very frustrating.

I sure hope you can get some real answers soon and things start to turn around for you. Hang in there!

 

[stupidbody!]

Agree with the other posts. As far as your doctor - is this the same one you've seen for 4 years? If so, NEXT. My dr was pretty sure based on my colonoscopy and the fistula. I don't know what all they test for in labs. I know my dr checked for a certain gene and that was neg, but he was willing to bet on crohn's. Don't wait around on that dr if he's being indecisive and nothing's working. I wonder if the weight gain is from prednisone. I don't know how much you've been on it. Find out who the best gi's are in your area.

 

[dannysmom]

Hi. My son has been sick for almost 3 years and still undiagnosed AND he has also gained a lot of weight despite eating healthier like you. The whole weight aspect is a mystery. Prednisone clearly made him much worse when we tried it. Did you get a copy of the pathology report? I also find it odd that your doctor can see inflammation but the biopsies do not show it. (unless they were just reporting on granulomas)
Good luck!

 

[Cat-a-Tonic]

Hi Nat, welcome to the forum and I'm sorry to hear that you're struggling to get diagnosed. I'm the same, I've had test after test but still no diagnosis. If you haven't already found it, we've got an Undiagnosed Club sub-forum if you'd like to check it out, it's under the Support Forum heading. There's lots of people here like us who are ill with no answers. It's unfortunate that so much of us have to deal with this and are suffering, but it is nice to know you're not alone and to have others to talk with about it. Hang in there, and I hope you can get some answers soon.